Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundationwas created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

March 27, 2017

Monday, March 27, 2017Tonight's picture was taken in May of 2002. Mattie was about a month old. If you look in the background of this photo, you will see Patches, our calico. Patches was NEVER far from her family and kept a close eye on all of us. This photo captures the sleepy/dreamy look Mattie had after a bottle. A sight I will never forget. Quote of the day: Two thirds of cancers are unavoidable even if you live a healthy life, a study has shown. ~ UK TelegraphMy mom sent me an article in the UK Telegraph this weekend. The title alone catches you.... Two thirds of cancers are unavoidable even if you live a healthy life study finds. As adults we are constantly told that what we eat, our lifestyle, and what we are exposed to greatly influences our chances of getting cancer. Which fits our society's mindset.... meaning that we are in control of our own destiny and what happens to us. But here is the sad fact, a fact that I learned in 2008 (WITHOUT needing a study!!!) is that so much of our health is OUT OF OUR CONTROL. This study simply confirms the reality.

Here is an excerpt from the article below that summarizes the message.......

The vast majority of cancers are probably down to unlucky defects in replicating DNA that occur out of the blue, they suggest. But it is not as well-known that each time a normal cell divides and copies its DNA to produce two new cells, it makes multiple mistakes. These copying mistakes are a potent source of cancer mutations that historically have been scientifically undervalued, and this new work provides the first estimate of the fraction of mutations caused by these mistakes.

The research, published in the journal Science, indicates that almost two-thirds of cancer-causing mutations are due to DNA copying errors. The discovery helps explain why cancer often strikes people who follow all the rules of healthy living and have no family history of the disease. Cancers triggered by copying errors could occur no matter how perfect the environment, according to co-author Dr Bert Vogelstein, also from the Johns Hopkins Kimmel Cancer Center. In some cancer types, such as those affecting the prostate, brain and bone, more than 95% of the harmful mutations were due to random DNA copying errors.

When I read that 95% of bone cancers (the type of cancer Mattie had) occur because of random DNA copying errors, how should this make me feel? Should this make me breathe a sigh of relief! Knowing that as his mom I did not contribute to the development of this disease? Frankly this knowledge just makes me shake my head even further, knowing that scientists are looking for the elusive "cure" for childhood cancer. A solution that seems very challenging to produce given that harmful mutations can arise anywhere and at any time. How do you design DRUGS to manage that? Now given all that was stated in this article, the last paragraph of the article truly gets me. After explaining the happenstance of these mutations, Professor Mel Greaves, director of the Centre for Evolution and Cancer at The Institute of Cancer Research in London than caveats the data by saying.......Even if, as this study suggests, most individual cancer mutations are due to random chance, the researchers admit that the cancers they cause may still be preventable. We have good evidence to show that cancer is caused by a complex mix of environmental exposures, inherited risk, and random chance.Are you confused yet? Which is it..... random mutations or the environment? Certainly we know in children it isn't the environment or inherited risk. That is one thing that the research (other research, not this study) seems to indicate, but to me this statement is more applicable to the adult world and that is where the message is directed. After all, we can't have adults walking around with the reality that they have NO CONTROL over their long term health and prognosis. Not a reality doctors can accept either by the way. But from someone who has lost a child to cancer, it is the REALITY and it truly is quite frightening!Two thirds of cancers are unavoidable even if you live a healthy life, study finds:http://www.telegraph.co.uk/news/2017/03/23/two-thirds-cancers-unavoidable-even-live-healthy-life-study/

1 comment:

Margy Jost
said...

Vicki, As a society, we will always look for answers & reasons that Cancer occurs. People will believe what fits their mindset and life. However, while the articles ending seems to refute the rest of the article, I will always believe the majority of Cancers occur randomly. This is hard to accept because we are a controlling society. However, as you know first hand, a Cancer diagnosis takes away all your control.Articles that list ways to avoid a Cancer diagnosis are so misleading, dangerous and just plain nasty for Parents whose child has Cancer. I can't count the number of times parents worried that the hot digs, they gave their child caused their Child's Cancer! There is no proof of that or many of the other theories. However, they are guilt inducing to the parents of children in treatment.The very sad, disheartening truth is a diagnosis of Cancer is random, mostly, but especially in the Pediatric World. The disheartening part of this is if we truly did know what caused it, the possibility of a cure could be on the horizon. The danger of all articles about how Cancer starts put people in a complacent place to not follow up with persistent complaints. In the Pediatric World, Pediatricians need to act quicker. All too often, they look for a simple solution instead of doing a CBC, looking for clues.I can't see how any article woukd make a pediatric Oncology family feel better. They are already fighting the horrible disease with their child! Cancer happens - I wish more than anything they would discover cures!

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Mattie Passed Away

With heavy hearts, Peter and I said goodbye to our precious Mattie when he died on September 8, 2009 at 7:15am. He fought death for five hours, but after being given propofol, he finally fell into a deep sleep. My hunch is he did not want to say good-bye to Peter and I, and it took massive amounts of drugs to end his suffering.

Mattie in Summary

Diagnosis timetable: July 23, 2008 - tumor in the right humerus; August 1, 2008 - tumor in the left humerus; August 6, 2008 - tumors in the right femur and left radius. On August 6, Mattie was officially diagnosed with Multifocal Synchronous Osteosarcoma.Tumor Resection and Limb salvage surgeries (repiphysis): on October 20, 2008 and November 12, 2008.Percentage of Necrosis: 60% in right humerus; 80% in left humerus; 100% in left radius; 2% in right femur.Chemo began on August 8, 2008: High Dose Methotrexate, Cisplatin, Doxorubicin; Ifosfamide, and Etoposide were added to the treatment protocol on December 1, 2008; MTP-PE was added to the treatment protocol on January 12, 2009.Chest CT scans post surgery:December 5, 2008 – four 3mm lung lesions; January 8, 2009 – CT scans reveal no change in the lung lesions; March 19, 2009 - CT scans reveal slight changes in two of the lesions. With potential increases in size of up to 1-2 mm per lesion. On June 5, 2009, CT scans at 1.5mm cuts (so very refined cuts) revealed that Mattie's lung lesions doubled in size since January. The four lesions are now 8-9mm in size, indicating that Chemotherapy is not working.Median Sternotomy: June 15th, 2009, removed 9 lesions, four in the left lung and five in the right lung. We do know that two of the lesions had calcified indicating bone material was present. This confirms that the bone cancer has metastasized to the lungs and that Mattie's chemotherapy was not effective at fighting the cancer in his lungs.PET Scan: There appears to be a possible variant (i.e something abnormal) in the lower left femur, but as of now it is too small to determine what it really is. Normally, one would biopsy this, but the location is difficult as it involves the growth plate, and with lung surgery imminent, and Mattie just being off of chemo, the advice we're getting is to wait and watch, and to see what it looks like during the next scan.Echocardiogram: Mattie has a reduced LVEF (Left Ventricle Ejection Fraction), which in layman terms means that his heart is not pumping with its normal level of pressure. Although it is not at a dangerous level, the doctors do want to monitor it with a follow-up echo in a few months to determine if this is a temporary impairment or if long term damage has been done.

Washington Post Article on The Mattie Miracle Cancer Foundation!!

An article on Vicki and Pete and the Mattie Miracle Cancer Foundation ran on July 24, 2010, in the Washington Post's Metro section.

Many thanks to Post Reporter Rick Rojas, for doing a great story on us! To read the article on the Post's website, click HERE

Washington Post Article on Reach the Day and Mattie's Blog

In the July 2nd, 2009 edition of the Washington Post, our story and our blog were briefly mentioned in an article regarding CureSearch's Reach The Day event, held June 22-23, 2009 on Capitol Hill.

Click HERE for a link to read the article on the Washington Post's web site.

H.R. 2109: CHILDHOOD CANCER SURVIVORSHIP RESEACH AND QUALITY OF LIFE ACT OF 2009

This video highlights some advocacy efforts to provide more effective drugs for childhood cancer patients and access to better care for survivors. This link also provides information on how to contact your representatives to urge them to support this bill.http://www.youtube.com/watch?v=fQY8vxO_quU

Mattie's Channel 9 Story

To watch the YouTube version of Mattie's video, click Mattie's News Story
or
to Read the actual story on the 9NewsNow site, click HERE

Mattie's Situation

Mattie Had Bone CancerMattie had a bone cancer called Osteosarcoma. The diagnosis was: multi-focal, synchronous osteosarcoma. He had four tumors in his extremities: the upper portions of the right and left Humerus, which is the bone that connects the shoulder to the two lower arm bones (the radius and ulna), the lower (distal) left radius (right near the wrist) and the lower (distal) right femur (just above the knee joint). Although commonly found in adults, this type of bone cancer is very, very rare when found in six year old children. Mattie started chemotherapy on Thursday, August 7, 2008, consisting of several five week cycles containing five types of drugs (Doxorubicin, Cisplatin, high dose Methotrexate, Ifosfamide and Etopicide). After the second cycle Mattie underwent a surgery (Oct. 20) to remove the tumor in his right humerus, and then a second surgery (Nov. 12) to remove the other three tumors. Mattie had three prostheses (both arms and the leg) that use the Repiphysis technology. We also tried an experimental drug called L-MTP-PE in the effort to give Mattie the best fighting chance of survival. It's a shame it wasn't enough.

All of our Family and Friends have done so many wonderful and amazing things for us to help Mattie. For that we are forever grateful. We want you all to know that we cannot thank you enough for these things and your selfless acts of kindness. We cannot adequately express how much your love, caring and devoted attention to Mattie meant to us. God Bless each and every one of you.

We made a deal from the beginning with Mattie to never lie to him about his situation, and we talked him through each step of the way. Mattie knew he had "some bad bugs" in some of his bones, and he knew that the drugs he was given were to kill the bugs, and the surgeries were meant to remove the bugs from his body. Mattie even requested from Dr. Bob Henshaw (who performed the surgery) "to let me keep a bone" once the procedures were over. Mattie did get several pictures of the procedures which he always thought were really neat.

This kind of statement only furthered our immense respect and astonishment that we had for Mattie and his emotional intellect, intelligence, and maturity. It was amazing that a six year-old could so quickly rationalize and embrace a situation and keep such a strong and positive attitude going, when his parents were a pair of emotional and physical trainwrecks. The irony is that Mattie gave us our strength to go on at a time when we should have been giving him his strength to fight.

Mattie's life during the 13 months of fighting cancer was not a normal one, even though we did whatever was humanly possible to make it as normal as possible. Fortunately, we have good friends who helped us get to the right doctors and to the program at the Lombardi Center in what everyone says was record-breaking time, who embraced us and helped us with what was unquestionably the greatest challenge of our lives. Of course, without our family and good friends, life would be a whole lot tougher than it is right now, so for those of you who are reading this, all we can say is Thank You and We Love You. God Bless.